Pulmonary function testing

[Willow7733]

Just curious, for those who have had pulmonary embolisms, did your pulmonologist send you for a pulmonary function test? I am going for one next month, and am not sure if he is testing for any complications with the PEs I had in December, or monitoring if my asthma is under control?

[Hidden]

I had a spirometry at outpatients a few months after I had my pe a few years ago where you breathe into a machine as hard as you can.

I can remember crying in relief after they discharged me from the clinic as the breathing test was all fine.

It's to see if the clots have done any damage is what they are looking for in the breathing test and it also looks for asthma as well.

Best of luck with it!

[Willow7733 in reply to Hidden]

Thanks! I sure hope they don’t find any damage. I am having a hard time to breathe even now, 4 months after. I hope this isn’t my new normal. 😔

[Brookiebiceps in reply to Willow7733]

It checks for ant breathing issues. It's a terrible test, it made me very dizzy.. I still get short of breath 7 months later...

[Willow7733 in reply to Brookiebiceps]

I am still very short of breath. I went to Costco this morning to pick up my prescriptions, and I was trying to catch my breath just doing that. So frustrating...

[Hidden]

I was sent for a lung function test after my PEs; I think they were worried because I got breathless so easily. The worst was having to walk up and down the corridor for five minutes with other patients sat watching me. You'd think they would have clapped at the end.....

[Willow7733 in reply to Hidden]

Haha I don’t like having people watch me either. In the hospital, when they would take me for CT scans of my lungs, I would be parked out in the corridor while people in the waiting room had full view and people walked past. So embarrassing.

[Brookiebiceps in reply to Willow7733]

What meds are u on? some of them cause shortness of breath

[Willow7733 in reply to Brookiebiceps]

I am on Plaquenil, and Coumadin (for lupus and blood clots. Dulera (puffer), and Ventolin, and Singulair (for asthma), Synthroid (because I have Hashimoto’s thyroiditis and it caused hypothyroidism).

[Brookiebiceps in reply to Willow7733]

Oh wow, sorry your having such a rough time!

[Willow7733 in reply to Brookiebiceps]

Thanks. I just want to get everything figured out so I can get on with my life. I just put my laundry in the washer and I had to sit down to catch my breath! So tiring....

[Brookiebiceps in reply to Willow7733]

Are your clots gone? How old are you? What was the cause?

[Willow7733 in reply to Brookiebiceps]

No. My body has to reabsorb them on its own. They were too large to use the blood clot medication that breaks them up (there were so many and they were so big they said the pieces would break off and I would have a fatal heart attack or severe stroke that would leave me paralyzed). They also can go in and suction it out or put in a filter type thing that would make sure the clot wouldn’t move should it break off...but they couldn’t do either because my anemia was so bad and the heparin they had to give me would make the operation fatal...I would bleed out on the table. So I currently have multiple clots, some as large as an inch, from my left calf to my heart and in both lungs. I am 47, never been sick like this in my life. I have had asthma but it is relatively well controlled and so is the hypothyroidism.

They thought for sure I had cancer. Given how many clots were popping up and how large they were. They did every test known for every cancer (had both an endoscope and colonoscopy). No cancer. Phew! Then I just happened to mention that I met my sister a few years ago (I am adopted) and she was just diagnosed with lupus. They ran some tests and...that is what is happening. 🤷‍♀️ They said I probably had it a long time ago as a teenager but never knew it. Every specialist I saw in the hospital were stumped. They just didn’t know how it was happening or why. That was the hard part because they kept saying I should be dead. But, if they didn’t know what caused this, and I am so lucky to have gotten through it, what’s to say it won’t happen again and I am not so lucky? It is scary...

[Brookiebiceps in reply to Willow7733]

Yes it is, what did you choose Coumadin over the other meds, I'm 41. I was diagnosed in late August

[Willow7733 in reply to Brookiebiceps]

They had me start on Xeralto, but when they found it was lupus, they switched me saying that lupus doesn’t react well to the newer blood thinners. It had to be Warfarin/Coumadin. I wish I could use an easier medication like Xeralto! My INR levels are all over the place and have to go early to work Monday and Friday mornings to get my blood test first thing so I can start my shift. Luckily I work at the hospital I get my blood tests.

[Brookiebiceps in reply to Willow7733]

Oh great, ru a nurse? I also work in a hospital. Are u in the US? I'm on injections right now.

[Willow7733 in reply to Brookiebiceps]

Yes I am! I work in the neonatal ICU, and OR. I live in Canada.

[Brookiebiceps in reply to Willow7733]

Thats awesome. I'm and icu technician and a pediatric medical assistant. I live in Pennsylvania! So very nice to meet u!

[Willow7733 in reply to Brookiebiceps]

Wow! Nice to meet you too!

[motorbike in reply to Brookiebiceps]

Apixaban. Sometimes my breathing is awful. I used to do marathons, I’m lucky to walk a few miles now . I’m 70

[Mallard]

Hi I had a bilateral pulmonary embolism and how we are dealt with are so different- I was diagnosed, given a heparin injection started on warfarin and told I was ok to drive home 😳

[Willow7733 in reply to Mallard]

Omg! That is so different. Were you ok to go home so soon?? I was in the ICU for a week, then step down (type of ICU) for another week. Then on the medical floor for two other weeks. I was on blood transfusions and iron transfusions, on heart monitors. I could breathe well but not on oxygen. I think the mask would have given me anxiety so happy for that.

[Mallard in reply to Willow7733]

It was so strange really, they were so complacent really. I had to go back to critical care every day for 10 days for heparin injections and then after that I had to attend the warfarin clinic weekly. After 6 months I said I’d had enough and stopped warfarin. I’m now on daily aspirin. I found being on warfarin too hard work with all the appointments etc. I was breathless for a long time after and still struggle on hills. I have had no follow up whatsoever. 🤔

[Willow7733 in reply to Mallard]

Wow! I find Warfarin is very tiring. Just when I get two consecutive INR tests at the right range, it goes out of whack again! And my GP keeps saying that if I stay in the right range for three blood tests, then I can get tested once a week then once a month! I would LOVE that! But it just won’t stay in the right range.

[Mallard in reply to Willow7733]

I was the same it was such a rigmarole - we love travel so I bought a warfarin test monitor to keep an eye on my INR levels abroad. I just couldn’t cope with this and my doctor wouldn’t put me on the other blood thinners because he felt warfarin was the best. That’s why I’m now on aspirin- I am keeping hold of my monitor just in case. I feel good now so I’m just thinking positive.

[Willow7733 in reply to Mallard]

Be careful because they say once you have a blood clot, there is a high chance for another one.

[Mallard in reply to Willow7733]

I know I have been warned - but you just have to get on with life x

[Willow7733 in reply to Mallard]

At this point I totally agree. So fed up.

[Mallard]

I live in Lancashire 😊

[Willow7733 in reply to Mallard]

Hello from the east coast of Canada! I am in New Brunswick.

[Mallard]

Thinking about it - my lungs were peppered with clots and part of my lung had infarcted - maybe that’s why it wasn’t a hospital admission. Perhaps if it had been a big clot, things might have been different.

[Willow7733 in reply to Mallard]

Mine were huge. I surprises me how fast I developed them. Or maybe they were developing And I don’t know...I am worried I will fail the pulmonary function test on the 12th. I am still not breathing well.

[Hidden in reply to Willow7733]

It's not a pass/fail thing - it's a measure of how well your lungs are working just now. If it's not very good, they will give you an inhaler and try again, to see if that improves things. They may well do that as part of the tests - they didn't for me as at the time I had tachycardia and they didn't want to make it worse.

[Hidden in reply to Mallard]

They don't keep you in hospital if you're not actually in danger. I was not admitted, but sent up to the ward where A&E patients can spend the night, as they wanted to do a CAT scan and it was about 2:00 am by then. Nurse brought me a cup of tea, nicest one I've ever drunk in my life!!!! So anyway, once I was diagnosed, they just waited for my medication to arrive, and then I was sent to the haematology clinic to get some leaflets and talk to an extremely nice (Canadian!) nurse practitioner who explained what was happening and what the medication did and what to look out for, and that I was to pick it up from the hospital pharmacy on my way out, which I did, plus some paracetamol as I had been an ibuprofen person up until that minute! And then I walked out into the sunshine and caught a bus home - and slept for the next 24 hours!

[Mallard]

Awww willow it will take time for your lungs to heal - mine was 2 years ago and I’m only 95% ok. You will be fine and the warfarin will ensure it doesn’t occur. X

[Mallard]

I know I made a brave decision to come off warfarin but you don’t need to. X